I begged Sen. Jeff Flake to listen to my story.

Ady Barkan is co-director of the Fed Up campaign, an initiative of the Center for Popular Democracy. He lives in Santa Barbara.

December 12, 2017

My path as an activist had been fairly conventional. After law school, I represented low-wage Latino workers in Queens who had been victims of wage theft, and I helped write New York City’s groundbreaking paid sick days law. Later, I created a campaign called Fed Up, urging the Federal Reserve to use its economic tools to focus on raising wages and creating jobs, not just minimizing inflation. I didn’t think of myself as a direct beneficiary of these policies: I was an upper-middle class white man with elite degrees, a bright future and financial security. I could focus on empowering others.

So I didn’t expect to find myself on a flight last week, face to face with Sen. Jeff Flake (R-Ariz.), arguing for policies that could save my own life. I didn’t expect to spend an afternoon in a D.C. jail, watching Capitol police handle me with kid gloves because of my new disabilities. I didn’t expect to be a beneficiary of the ideas I’d devoted my life to fighting for. Anybody’s fortunes, it turns out, can reverse in no time. That’s why we need an economic justice, good jobs and basic fairness for working families. And that’s why the GOP tax plan is a danger for every American, especially, to my surprise, me.

Fed Up was always about helping people the economy had left behind. Armed with noisy chants and green T-shirts with wonky slogans, my colleagues and other activists regularly crashed the annual Fed confab at Jackson Hole and its once-staid congressional hearings. We sat down with the decision-makers — we’ve met with each of the Fed’s presidents and governors, sometimes twice. They all listened intently to our stories and engaged with our arguments; Fed Chair Janet L. Yellen appeared to tear up during our first meeting with her.

When we talked about esoteric terms like “the prime age employment-to-population ratio,” it wasn’t academic. Because we were really talking about whether a college-educated black man in St. Louis would be able to find a steady job or whether hourly workers could expect to see wage increases. Sometimes these were even questions of life or death — not for Yellen or for me, but for many of the people who joined me in those meetings. Maria Rubio, a human rights lawyer and refugee from Honduras who struggled to make ends meet as a cleaning lady in New York City, and Rod Adams, a young Minneapolis man who could only find low-wage retail work after he graduated from school, made their own cases to the Fed governors and presidents we met. The campaign built its strength from those conversations — conversations like the one I had with Flake.

But, just as the Fed Up campaign was taking off, my life changed. In October 2016, I was diagnosed with ALS (also known as Lou Gehrig’s disease), a fast-moving degenerative disease that is paralyzing my whole body. It’s rare, especially for people in their early 30s like me. One day I was enjoying afternoon runs along the Santa Barbara coast. Today, I need a cane to get around the house, can’t cut a piece of meat at the dinner table, and don’t have the arm strength to pick up my 30-pound toddler and put him in my lap.

As the details of the GOP tax bill slowly became public, I realized that my lifelong fight for economic justice wasn’t just ideological. It was now personal. Already, I face agonizing questions like the ones faced by people I’ve spent my career advocating for: In the coming years, unless a miracle strikes, I will need a wheelchair and become dependent on others to keep me clean, fed and comfortable.

I will also need to decide whether to rely on a ventilator and a feeding tube to keep me alive — for between $150,000 and $330,000 per year. And I won’t be able to work, so we’ll be dependent on the generosity of family and friends, my wife’s salary and Medicare.

The Republican tax bill could cut many people like me off from government services. It automatically triggers $400 billion in cuts to Medicare, and Mick Mulvaney, the head of the White House Office of Management and Budget, will have sole responsibility for deciding what programs to slash. Mulvaney opposes the Medicare disability program. If this tax bill passes, will I be able to get the ventilator I need to stay alive?

These worries brought me to Washington last week to protest the bill. Along with dozens of other disabled people and our allies, I tried to meet with House members to tell our stories and urge them to vote no. But when the staff of Rep. Darrel Issa (R-Calif.) staff locked their door to us, I began telling my story in the hallway to anybody who would listen. Capitol police asked me to leave, and when I refused, they arrested me and several others. They treated us well. A few officers gave us a thumbs-up as they were leaving the station. Another officer whispered, “Bless you for doing this,” as he placed cuffs on my compatriot.

On the flight back to California, via Phoenix, I ran into Flake, who has earned plaudits for choosing, in his words, “country over party” in disputes with the White House and Trump’s wing of the party. When he announced his retirement with a rousing speech on the Senate floor recently, he noted that elected officials must turn their principles into action: “What is indispensable is what we do here in defense of those values. A political career does not mean much if we are complicit in undermining these values.”

But, bafflingly, he nevertheless voted for the Senate’s toxic tax bill. I spoke with him on the airplane and Liz Jaff, whom I had met while we were boarding the plane, recorded the encounter. I wanted to explain that the bill does few of the things Flake or other Republicans say it will do: It raises taxes for 22 million American families and, according to all credible estimates, significantly increases the deficit. It will widen inequality, and it won’t stimulate much economic growth. And by eliminating the individual health insurance mandate, it will raise premiums and undermine the insurance market for the whole country.

Flake told me that he was extremely unhappy with the irregular order that the Senate has used to draft this bill. If he and his senior colleague John McCain (R-Ariz.) want to rebuild the integrity and legitimacy of the institution they love, they have a chance: They can demand a return to regular order for this bill, and then vote for it next year — after the proper committees have held hearings on all the relevant policies, after experts and ordinary Americans (like those in our Fed Up meetings) testify about the effects, after the Congressional Budget Office has scored it, after Americans get to hear what’s in it and register their opinions. There is no need to rush to passage now. The American government is the shared project of the American people. Its legitimacy comes from its responsiveness to our needs and wants. Experts overwhelmingly say this measure pleases the wealthiest donors, not the average American.

For many people, life is good until unlucky disaster strikes. But disease appears. Houses burn down. Drunk drivers run red lights. That’s why we invest, together, in a safety net to protect us — particularly the most vulnerable among us — from misfortune. I want members of Congress to understand this, so on Wednesday I’ll be back with my wife, my son and hundreds of other Medicare-dependent Arizonans and Mainers to implore Flake, McCain, and Sen. Susan Collins (R-Maine) to hear our stories. I know from my experience with Federal Reserve leaders that such dialogue can cut through the vitriol, dishonesty and posturing that infects much of our national politics. This is how democracy works.

Flake listened carefully when I addressed him. If he really heard me, he’ll vote against the bill after it’s reconciled with the House version. My son and I — and millions like us — are counting on it.